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AVM Survivors Network

Undecided what treatment option is best for my 7 year old son with Grade 4 AVM (5.6cm)

Hi everyone,

I am new to this site and was hoping for some advice on radiation treatment for my 7 year old who had a stroke due to a avm rupture in Jan, 2013. His AVM is inoperable and could not be embolized. UCLA is recommending radiation. Undecided if Novalis or proton therapy is right for him. Any advice will be greatly appreciated

Thanks
Jessica

Hello and welcome. There are 2 sub-groups you may wish to join…http://www.avmsurvivors.org/group/parentsofavm and http://www.avmsurvivors.org/group/radiosurgerypatientsgammaknifeother

Hi Jessica
I recommend you to do according to the UCLA advice.
Good Luck
Alireza

We Have a 10 yr old with inoperable avm left parietal lobe. Thank god it has not ruptured - after a great deal of thoughts and many consults across the country it was reinforced that proton would be the best treatment for him due to location. The challenge is time - proton could take up to 3 yrs to work at the sane time still having risk of bleed. I would listen to your octors but, also send his info to others for opinion.

god bless
Pat

I used UCLA took thei advice and nvr regretted it. They r wonderful and knowledgeable. Terrific neurosurgery dept. Good luck!

Hi Jessica,
I hope your son is doing well and I’m sorry you are having to go through this.
We have an 8-year-old daughter with an inoperable AVM (high grade, deep).
Talk to several doctors and get a range of opinions. I’ve heard good things about UCLA but you may also want to talk with UCSF, Stanford and even try some east coast options like Boston Children’s or Pittsburgh. There is also a lot of research out there on radiosurgery for AVMs… If you can try to explore some on PubMed or feel free to email me.
We ultimately chose CyberKnife at Stanford. Our daughters AVM is large and requires staged treatment so CyberKnife with its frameless approach (gamma knife frames can be hard on peds) was our choice.
Our thoughts and prayers are with you!
Yon

Jessica, my prayers are with your family. UPMC Presbyterian as previously recommended did my AVM with gamma knife (localize radiation). I would consult every option and pick the one you are most comfortable with. May God’s blessings and healing touch be with your family

My son Gavin also has an inoperable AVM. Ha had a mild bleed in October 2012 (first time we learned he had an AVM) at the age of 5 and a massive stroke in Feb 2013, 4 days after he just turned 6. He has fought hard to survive and continues to make incredible gains each day. We love his doctors at CT Children's Medical Center (CCMC) and the ones that collaborated with them from Hartford Hospital as well. One thing they have always reiterated to us is that getting a second and/or third opinion is always great to do and we did. We traveled to NYC and consulted with some well known specialists. It has helped us to increase our understanding, opened communication between all the doctors and allowed us to feel comfortable with the decision on how to approach. Right now we are in a waiting pattern. Gavin's AVM is inoperable in that it is really dispersed in his brain and not the tight bundle you would like to see with an typical AVM. Due to it being dispersed, he has brain tissue around each branch that can be damaged and cause more damage if treated right now. They are now leaning towards calling it a cerebral proliferated angiopathy. The hopes in waiting is to see as he grows a bit more, that it will pull tighter together and present a nidus more clearly. Then we will go the Gamma Knife route with a specialists in NYC. Gamma knife takes longer to have an effect but it would be less severe then completing cutting off the blood supply with a embolization. Gavin has had 2 small embolizations to treat some areas of immediate concern. One time in March and another time in August. August was hard because he was well into his recovery and we noticed some immediate loses he had with the embolization procedure. He was set back weeks with his speech gains and seemed to exhibit more perseverative behaviors. Very difficult decisions to make for your child and see the outcomes of the decisions. Again, second opinions are great to get. It has helped us to feel comfortable with our decisions. Sending positive thoughts and prayers your way.

Jessica,

It seems your options are somewhat limited. While I had surgery to remove my AVM, I did have the option of radiation. I was discouraged from radiation due to the risk of another rupture before the AVM could be eliminated. Assuming that every treatment was spot-on.

After the surgery, I developed double-vision, which is a bit like being cross-eyed. To be honest, it's maddening. I have had three surgeries to correct, but all have failed. I am doing another round of vision therapy, but any progress is slow.

I wish I had learned more of radiation, and it's effectiveness. I would encourage you to meet with the best doctors available to you, and learn of the pros and cons of radiation.

Here is what my nerosurgeon told me. Radiation takes some two years to eliminate an AVM of my size. Mine was a 3. Additionally, during that time, I would face a risk of another bleed that would likely kill me. While a small chance, maybe four percent, it was believed to be too great. Also, the beam had to strike the AVM every time. If it struck adjacent to the AVM, the damage would be permanent, and may not manifest itself for years to come.

That's it in a nutshell. Good luck and be well.

Greg

Good morning. My daughter when diagnosed was the same too large and dangerous to operate and could not be embolized. We live in Columbus ohio and our children’s hospital does not handle these cases very often. Our doctors consulted with ohio state and decided that no action was best. For my wife and myself that would not work. We sent many files for review. One you may want to consider is Dr. Spetzler in arizona. He is the one that developed the grading system for size. If I remember correctly it only cost $150. He recommended gamma knife which we did June 2012 at Cleveland clinic. She has had a MRI at six months which did not show much improvement and another at 12 months which we have started to see significant reduction in size. She did well with the procedure and other than being tired no issues. Next day she was back to normal. We are lucky and have no issues other than the occasional headache. But each one reminds what could happen. Our daughter continues to live a normal life in school and sports. I pray that you are able to do the same as you go through this with your family.

This is my first time posting but I was touched by your story. All I can do is share my experience. I have (had) a Grade 3-4 AVM with no symptoms other than pulsing in my ear. My neurosurgeon did not recommend embolization either. His recommendation was proton radiation treatment. He also clearly mentioned I had the option to do nothing which does not seem an option for you since he has already had a stroke. My doctor explained the risks of radiation which weighed heavily on my decision. However, I decided I didn't want this ticking time bomb in my head. I am a clinical laboratory scientist and have to admit I was intrigued by the science of proton radiation.

I went for the proton radiation treatment. I required two treatments. I did great until about nine months afterwards and started having seizures with THE MOST incredible headaches. My doctor had told me I could have side affects from the radiation up to 12 months later. In the meantime, my AVM kept shrinking and shrinking. It took some time and I am still working on getting the seizures under control with my second neurologist. But on my two year post-radiation anniversary and most recent appointment with my neurosurgeon, he told me the AVM was barely visible on the MRI. He predicted that by my next MRI (in a year) the AVM would be totally gone! I cried tears of joy. Even though I at times regretted having the radiation, I know I made the right decision. My wonderful neurosurgeon told me in the beginning that if the radiation was successful it would take about three years for the AVM to "self destruct". It looks like this will be case! I hope my story helps and I would be happy to discuss this further if you want to talk "off line". My prayers and best wishes are with your family.

Get a second opinion and move forward with treatment.

I am getting ready to do radiation gamma knife on Jan. 21st. The nurse practitioner was very good at explaining things to me. She said that the radiaton treatment does not increase the risk of a bleed. I too have an unoperable avm (in the basal ganglia - unruptured). She explained to me that the veins in the brain should look more like a tree. An avm may make part of the tree look tangled. Cutting out a deep avm would be like cutting the tree off at its trunk which can affect way more functions of the brain, as opposed to cutting off the tip of one of its long branches (affecting a smaller portion).
The goal of radiation is to damage the avm so that over time (2 to 3 years), a new vein will hopefully take over and bypass the avm, allowing the avm to die off since the brain would no longer need it.

Hope this helps. I wish you and your son the best of luck.

Thanks Barbara H! I will join.

Thanks Alireza!

Thanks Pat!

Thanks Gloria! I have decided to proceed with UCLA.

Hi Jessica,
I am so sorry to hear you have a little one with an AVM. I lived a normal life until my AVM announced itself with a major hemorrhage just before my 15th birthday. It was inoperable..always. Six years later, at age 21 I suffered another bleed. I showed recovery for years after the first one, now the end of my junior year of college I faced another one. At this time, 1979, they had developed the Proton Beam radiation. I had been at UCLA also. I was under the care of a most renowned neurosurgeon that just passed away. We had a doctor/patient relationship that spanned decades. His decisions saved my life, until I got to this point. His name was Dr. Robert Rand. I flew from CA. to Boston and had proton radiation. It takes two years to work, during that time I suffered more and more hemorrhages, but at UCLA under Dr. Rands care and sticking with it being inoperable, I kept surviving. I had to wait a third year, and again went to Harvard for another proton radiation treatment in 1982. I suffered one bleed right after that treatment. I got along, with headaches, until 2011 when I developed a hematoma on my brain stem from the, still there, AVM leaking. I was in grave condition and within days or hours of losing my life. At UCLA Dr. Neil Martin and his team, in a very complex surgery removed the hematoma and resected the AVM. It is a miracle I'm alive. I am very familiar with ALL the doctors there. Feel free to contact me. Dr. Fernando Vinuela performed embolization the day before surgery to keep blood out of the way. He too is wonderful and I was sent to him by Dr. Rand years ago. He paved my way. Recovery has been difficult. Please contact me. I am curious of the stats. I was told that even though the radiation didn't obliterate it, it spared my life until technology got to where it is today and I could have surgery. I will tell you that only a handful of surgeons could have pulled of this surgery, and Dr. Martin is the vascular surgeon there. Much is riding on this decision. Best of luck to you.

Thanks Yon! My son also has an inoperable AVM(Grade4 5.6cm )We have decided to go with UCLA with the fractionated Novalis treatment. His will also be frameless. They are going to mold a mask for him to keep him in place during treatment. He will have 5 sessions of radiation treatment.

Thanks John!